Thursday, July 29, 2010
An enormous thanks to Billie Gary for watching the kids today. She is one of the sweetest women I have ever met and our kids adore her. Trevy had her in nursery in our former ward and just loves both her and her husband.
I was able to make it to the NICU in time for rounds this morning. This close to the end, there isn't a whole lot of new stuff or procedures to discuss. I don't feel as desperate to make it to rounds anymore, but today's definitely made me anxious. There is a new attending doctor in the NICU. He is foreign and has quite an accent (I think Indian but not entirely sure) and I know some of the nurses have had to have him repeat things. Somehow, I haven't really had a hard time following him and I'm grateful for that. He seems very knowledgeable and eager to help us get out of the NICU instead of trying to find even the most miniscule reason for keeping us there.
Timmy finally had a GI consult for his jaundice and, huge relief, they find that his high bilirubin is the result of the TPN overworking his liver. It's still a little surprising to have his numbers be as high as they are now that he has been off the TPN for almost two full weeks, but he will continue to be watched, possibly still in the hospital but definitely by his pediatrician, whom he meets as soon as he is discharged next week. He will also continue to be watched for his ROP (retinopathy of prematurity - eye vascularization), GI function with regard to the intestinal surgery and respiratory fuction with regard to the trach and when he is ready for decannulation. (Turns out someone already came up with a better verb than "detraching".) Needless to say, the next year of our lives is going to be very busy with appointment scheduling on top of just taking care of Timmy on top of taking care of the other three munchkins in our house.
Timmy's weight gain is still of concern. They would like him to gain a certain amount over the next week. (Okay, my brain was a little tired to do the math, but they calculate it on him gaining so much per kilogram over the next week and I can't remember exactly how much it is. I think they want him to average a weight gain of at least 20 grams per day.) Wednesday's gain of 25g was a good start but that, unfortunately, did not continue today. Instead, Timmy lost another 10g, although Stephanie said he had quite a few bowel movements and a poopy diaper right before she weighed him. Blast! At least he waited the night before until we were through with his cares and had already weighed him.
It was still a good morning overall. Dana gave Timmy a tub bath and showed me how to incorporate cleaning under the trach ties and being careful not to get water in the trach. Really not that hard, but it does help me form ideas in my mind of how I want to organize our routine at home. His belly looks distended again in the pictures, but he just finished eating. He loves his milk!
To me, it seems to make the most sense so far to do baths at night and get him really good and clean in and around the trach even in the tub, get him nice and dry and change the ties after his bath every night and the trach before bed twice a week (to start, at least) so that I know he is going to bed with the cleanest airway possible, lest anyone watching at night fall asleep on the job. I may be a bit paranoid, but the thought of him losing his airway while we sleep on through it freaks me out. I know that's the point of the apnea monitor we'll be getting, but I wish we could take the entire monitoring setup home from the hospital for peace of mind, if nothing else.
One other small issue that arose during rounds was brought up by Leah, Timmy's current resident. (They just changed again.) Now from the site of insertion of Timmy's broviac, there is a red patch extending upword along the track of the line. The words she used to describe it were "erythematous" and "nonfluctuant". Sad how both rang bells from my college days but I could only pinpoint that erythematous has the same root as erythrocyte (red blood cell). And I was right on that one - erythematous means red as a result of inflammation and nonfluctuant means that the area is firm and not movable. It is definitely palpable. No one was quite sure if the surgeons saw it on their visit yesterday morning or not, but it will be brought up shortly.
I was able to check off the second of my trach changes with Dana this morning. Definitely an improvement over the first time. Timmy tolerated the whole thing extremely well and we put a cute little western onesie on him. I couldn't believe I didn't remember seeing it when I was going through all the clothes that were given to me and then Dana told me that she brought it for him. She's so sweet. There have been a couple of moments where I know she's had a bit of emotion at the thought that Timmy is on his way out. We will sure miss her. Trying to talk her into logging onto Facebook as well so we can still keep in touch.
Stephanie had Timmy again tonight. She was just trying to feed him when I got there around 10:00. Tonight's late arrival was due to James going on splits with the elders. I really think some of his stories from tonight were even better than the ones he had when he was Elders' Quorum president back in Oregon. I don't begrudge him at all. He definitely needs to be able to get out. He was called to be our ward executive secretary this past Sunday and I know he is going to be one very busy man for a long time. Guess that's what happens when you show the world how amazing you are. All I ask is that the Lord not give him a calling that he needs to sit on the stand for anytime soon.
Back to Timmy, he had only taken 10mls so I took over. Not sure if my milk supply is dropping or not. One of my pump tubes has a small slit and I've been eager to see if I can get more out with the hospital pump. However, it's tricky trying to balance pumping and nursing. When I nurse Timmy, I just let him take as much as he wants for as long as he wants, which sometimes puts longer stretches between feedings/pumpings. It's hard to squeeze in an extra 15-20 minute pumping session after a 45-minute breastfeeding session. So eager to get Timmy home where we can get ourselves into a good nursing schedule and someday soon wean off the pumping altogether, unless necessary.
I then talked to Stephanie about Timmy's weight for the night and that's when she told me he was down another 10 grams. Not what I was wanting to hear. Honestly, I do love that he is still little and can still fit in the preemie clothes, but I am so ready for him to come home and, therefore, very ready for him to put on a little weight. She said she really thinks it's the bowel movement. I asked if we could just weigh him again really quick when he was done eating. I guess that was a no. He did take 55-60mls with his bottles today, which they increased fortification on up to 24 calories now. I was pretty optimistic that that alone would help bump up his weight last night. Maybe today when he has been on the higher calories for a full 24 hours.
Around 10:30, a fabulous light show started outside and it finally started pouring down around 11pm. We are so behind in monsoon rain. It was so nice to hear it pelting the window and see it making lots of puddles in the parking lot outside the window. I love monsoon rains and it was fun to sit holding Timmy without any other distractions and just watch the rain.
When Stephanie approached me about Timmy needing to wake up for his 1am feeding, I asked about doing the final trach change. She informed me that Timmy had been pretty upset the last time we did two trach changes in one day and she wasn't so sure about doing another one, but, ultimately, she would leave the decision up to me. I thought the information was a little odd because I was the one who performed the second trach change on Tuesday. I'll be honest that I think the reason for his greatest distress was my inexperience, taking a little longer and not being the most steady. Not to mention that I did my first trach change only about six hours after James did his and it had already been well over 12 hours this time around. So I told her I wanted to go ahead and change the trach so I could finish off my requirements. (James still has two trach changes and I would hate to have Timmy have to undergo three back-to-back at the last minute to we can get him discharged.)
He was most definitely unhappy. I do believe that it was mostly because of the feeding delay, though. I already feel much more confident in changing his trach and the ties. Not sure I'm doing the greatest job with stoma care, though. Definitely going to work on that one because I really don't want him to have to deal with his skin breaking down because his mom isn't doing a very good job keeping things clean. (The stoma is the actual hole and mucus seeps up and around the trach and ends up soiling the trach and skin under and around it. Left for too long or getting cleaned off but leaving the skin wet will cause irritation and skin breakdown.) I went as quickly as I could and had both Gayle (one of the RTs) and Stephanie there to assist. The only problem came when Timmy dropped his chin right after I removed the first trach. I just asked Stephanie to tilt his head back for me and the new trach slipped right in. I was actually kind of surpised how calm I felt doing the whole thing. But it really makes me feel like we are going to be okay doing this on our own.
Another good nursing session and I was able to tuck Timmy in all snuggled and sound asleep for the night. I know I fell asleep myself at some point. Definitely not trying to spend the night anymore, but I have been falling asleep there anyway. I am very apprehensive of the amount of sleep we will most likely continue to lose over the next year or so (PLEASE let it be only a year until the surgery and PLEASE let the surgery go smoothly and Timmy be decannulated) while we are on extra watch to make sure that Timmy's airway is open.
If anyone is a night owl or just an insomniac who feels they want to watch a sweet sleeping baby at any point, please let me know. You could just wake me when he's hungry or needing suction. Anyone? Anyone?
No comments:
Post a Comment